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ALS News & Research For postings of news or research links and articles related to ALS |
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#1 | |||
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Grand Magnate
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Electrical device allows paralyzed man to breathe
http://web.archive.org/web/200503061...ML/000662.html Acetylcholine neurons - the ones that contact the mucle http://web.archive.org/web/200311031...ML/002172.html |
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#2 | |||
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Grand Magnate
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Its hard to believe I am approaching my sixteenth 'anniversary' since formally engaging the ALS 'battle.' I was indirectly involved years before because the research area where I work can help many individuals, including those with ALS. According to the rules, six to seven years are required to validate a new molecule for treatment in a particular disease but numerous "Big Pharma" types have publically advised aspiring scientists they will need at least ten to fifteen years: if they are lucky. At present, as the DiPALS study evidences, the pacer is not yet ready for a Phase III study but how far away are we? Thankfully patients may obtain the pacer via the HUD/HDE but what about the guidance physicians and patients need on perfecting the timing or elucidating the therapeutic value seen in the report of Dr. Onders in last year's American Journal of Surgery? Bad medicine can save time but good medicine can save lives! The question whether there is a case against the pacer is of course an important one; I often review the cases I have discovered to appraise whether the weakest cases can be selected, and construed as a pilot study - are there inferences validly drawn therefrom working against the treatment? The ordinary media can make the task more difficult by failing to be careful in its choice of words. We still need to work on the question of 'it seems to work in many cases but why?'
Indeed, why do people get ALS to begin with? At present, I am not sure whether those who would pursue a case against the pacer deserve 'a turn at bat' and I will develop this thought later but I wanted to point out the significance of Dr. Onder's paper as a showing of a de-facto biomarker, or even better than a biomarker. The ability to read the diaphragm's EMG signals live and continuously for long periods of time ought to make efficacy studies less expensive and faster to achieve preliminary insight as to prospective molecule's value. Patients may find they could enter studies based on the extent of the involvement of their diaphragm muscles and whether they are using the pacer as satisfying entry criteria . . . such can be a little better than the 'recently 'diagnosed'' standard; I shall also try to explain why such ought to be so. |
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#3 | |||
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Grand Magnate
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I wish to restate an important point, . . . pacing ALS patients ought to be valuable in medical research studies even if they are not freshly diagnosed. Where their diaphragm remains unaffected or the impact has begun but the impact is not extensive, researchers ought to find ALS patient candidacy for studies valuable even if the study is not directed at the ALS patient because the data obtainable from dEMG may show evidence valuable in their immediate research interest or valuable to ALS researchers if the dEMG data shows some affect on the ALS disease processes.
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#4 | |||
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Grand Magnate
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Experts Hack for Lyme Disease Solutions in Boston and Berkeley
https://www.morningstar.com/news/pr-...-berkeley.html Lyme disease is often portrayed as 'falsing' the symptoms of ALS and those who try to determine whether they have Lyme disease are often frustrated the tests for Lyme are not very reliable. see also: Hacking Lyme Disease https://www.massbio.org/news/blog/ha...disease-122003 I thought this event already happened . . . : Lyme Innovation: Three Day Hackathon Jun 17-19, 2016 http://lymeinnovation.org/upcoming-events/ |
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#5 | |||
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Grand Magnate
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Although it probably will not stay there, for the first time the set of patients I am following achieved sufficient days to exceed the 'maximum' life expectancy . . . the data set has deficiencies such as inadequent date specifications and patients who have not been heard from in a long time. I detected several of these long lost cases recently; although most did not change the data much, some did. I am currently reviewing the data set from the point of view of 'false positive' . . . the chance these results are 'false positive' is? . . . I expect it to be small, I am hoping it will be smaller than one would likely guess.
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#6 | |||
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Grand Magnate
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Discovered Charley remains with us:
http://iydlify.blogspot.com/ due to post dated April 23. Was implanted in 2009. |
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#7 | |||
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Grand Magnate
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I remember a paper referring to a study in Scotland regarding the gastronomy tube and very high death rate of 25% and then remembered the Scottish games, wherein one event involves individuals tossing around telephone poles. The higher death rate might well be linked to larger size of Scottish people, though the report might not have indicated same. Never the less, as I would suggest, not only should ALS patients tone down the jogging, avoid, too, the caber toss until an ALS cure is found and you have full recovered.
Caber Toss Scottish Heavy Athletics - Caber Toss |
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